As an intersex woman and a doctor, I’ve seen the dangerous stigma the US medical establishment attaches to our community.

September 12, 2017

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When I was 22, I sat in the kitchen and did something I never imagined I would do: discussed my medical history with my grandfather. Tears stung my eyes as we talked openly about a secret my parents had fiercely protected me from for years: I’m intersex.

In my case, “intersex” means that I am a woman with XY chromosomes. My condition, called Complete Androgen Insensitivity Syndrome, meant that my body did not respond to male hormones, and so I developed an externally typical female body. When I was 6, I had routine surgery for a hernia in my groin. During the procedure, instead of ovaries and a uterus, my surgeon found undescended testes.

My parents, both physicians, took me to a specialist who had been their professor. Although I was healthy, he said, my condition must be kept secret from me; intersex people who find out might commit suicide. So my childhood physicians prescribed total secrecy.

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This was the legacy of the now-discredited “blank-slate” theory of gender that gained traction in the 1960s. For intersex children, the thinking went, “If we make this child look and function like a ‘normal’ boy or girl, and never tell them otherwise, everything will be fine.” Although we now understand that gender identity and expression is informed by a combination of nurture and nature, the importance of an intersex child’s genitals’ being surgically altered remains the bedrock of an ongoing medical paradigm.

Even when I entered medical school 10 years ago, we were taught, without robust scientific evidence, that an enlarged clitoris is “abnormal” and that otherwise healthy undescended testes in a girl are always “precancerous.” Textbooks told me that “ambiguous genitalia” in a newborn baby constituted a “social emergency”—one that required immediate intervention. According to the medical establishment, the intersex body needed to be “repaired.” A decade later, doctors continue to perform surgery on intersex infants and toddlers with the aim of making it easier for them to grow up “normal.”

As a practicing physician myself, I empathize with my doctors. More than to do no harm, we want to do something good. We dedicate ourselves to helping our patients confront and conquer the unthinkable: sickness, pain, and death.

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But as an intersex person, I know that “correcting” and concealing intersex bodies causes harm. If our community, including our caregivers and medical-care providers, are to develop standards of care that do good, they must respect bodily diversity. Doctors need to stop trying to avoid harm by trying to fix or hide our bodies and pain.

As a new parent, I can begin to connect with the burden and fear my parents carried. Growing up, I learned little by little that I would never menstruate or be pregnant, that I’d probably need surgery, and after that, take hormone pills for the rest of my life. It was painful to be different, but what made that difference excruciating was the silence about why. My family had no vocabulary to discuss my reality, no connection to anyone who had lived through it, and no assurance that things would turn out OK.

When my mother found support, the silence began to change. She met intersex adults and parents of other intersex children. She learned that the secrecy was worse than the information it concealed. My junior year of high school, she told me my diagnosis, and took me to an annual event where intersex people from around the world and their families gather. The Androgen Insensitivity Syndrome-Differences of Sex Development Support Group has been a second, life-sustaining family for all of us.

I’ve now met countless intersex people and their loved ones. We are diverse in every conceivable way, but we share the experience of having bodies that don’t meet the conventional definitions of male or female. Despite their making up about 1.7 percent of the general population, many never meet other intersex people or find out about our diagnoses until adulthood. Instead, through our medical treatment, we learn—tacitly and explicitly—that we are freaks.

The denial of our bodies creates shame and pain. The truth is that our bodies are not typical. The truth is that our genitals have been examined scores of times by strangers before we’re old enough for sex ed. The truth is that many of our bodies have been permanently surgically altered to fit a gender chosen for us, not by us. The truth is that those irreversible surgeries are often done when we are too young to participate in the decision, let alone have a sense of our gender or what kind of sexual intercourse we might want to have. The result is too often urine leakage, bladder infections, loss of sexual sensation, pain with intercourse, hot flashes, osteoporosis, absence of sexual desire, arousal, and orgasm.

As a result, intersex people struggle with the very things these interventions aim to protect us from: depression, anxiety, suicidal thoughts, PTSD, and difficulty with intimate relationships. Of course we are angry at our doctors and medical treatment.

Procedures that strive to align the gonads, genitals, or internal sex organs of intersex children with conventional definitions of male and female carry all these risks. What’s more, very few have been shown to confer clear and consistent benefits. These surgeries are not medically necessary, and can safely be deferred until a person is old enough to participate in the decision.

Fortunately, treatment models are changing, thanks to intersex-advocacy groups and allied physicians. Withholding medical information from a child is no longer standard. I’ve seen the huge benefit this has had on the young people growing up in our support group: They are bright and brave, celebrating their diverse bodies and posting educational material on their social media pages.

Yet, as documented in a recent Human Rights Watch report, early childhood surgeries, some aiming to make genitals look more “normal,” are still common.

Last year, the American Medical Association Board of Trustees recommended that “except when life-threatening circumstances require emergency intervention, [doctors should] defer medical or surgical intervention until the child is able to participate in decision making; and…provide psychosocial support to promote patient and family well-being.” Recommendations like this ought to be made the official stance of professional organizations like the American Medical Association and the American Academy of Pediatrics.

I know it’s existentially jarring to accept that physicians can be a cause of suffering. Like my peers, when I am on the receiving end of a patient’s anger, I turn to colleagues for support and scour databases to learn what I can do differently. Like my peers, knowing that a patient felt I didn’t do what was best for them lingers in my mind every time I see someone who reminds me of where I went wrong. And like my peers, my helplessness and guilt can make me want to blame or avoid my patient.

And yet, progress cannot occur without validating the anger that patients feel as a direct consequence of their treatment. Some physicians struggle to understand this, insisting that they did what they were taught was right, dismissing intersex people’s pain as non-representative, and telling us we need to not be “angry activists.” But by listening to and legitimizing the anger and hurt of intersex people, physicians can help us heal. This is absolutely critical to create affirming, supportive, and transparent treatment models.

That is why I remember so clearly that day when my grandfather acknowledged my anger—”You must be mad as hell.” It was the first time someone saw that I was furious—at my parents, my doctors, and at my DNA. As soon as he said it, I felt heard and understood. The anger did not disappear, but it began to lose its grip on me. I began to heal.

Ending medically unnecessary non-consensual surgeries is the first step—a necessary change to build trust. Then we can all begin to build a model of care focused on healing.